“Having been saved by the best of medicine, I wanted to do what I could to improve the future of medicine.” - e-Patient Dave
Dave deBronkart’s experience with kidney cancer was the start of a journey that made him e-Patient Dave. He is now one of the leading voices for a movement to empower and engage people with medical conditions to become active participants in their healthcare. I recently interviewed Dave about his new book: “Let Patients Help! A ‘Patient Engagement’ Handbook — How Doctors, Nurses, Patients, and Caregivers Can Partners for Better Care.” The book is named after the ending chant of his TED Talk.
The power of patient networks
“I am someone who was almost certainly going to be dead by now.”
In 2007, Dave was diagnosed with aggressive kidney cancer with a high mortality rate. He attributes his survival to two things. One was that his physician, Dr. Danny Sands, was a pioneer of the e-Patient movement and encouraged Dave to connect to others in the same situation.
“The second was that as a result of that, I got information that doesn’t exist in the medical literature and that my oncologist believes helped save my life.”
Through this patient network, Dave received information about coping with the side effects of his highly specialized and risky treatment. “I brought it to my oncologist and said “I found this. What do you think? This was the patient being a full working partner with the doctors.” After his recovery, Dave started to see that the vast majority of the world doesn’t know things like this are possible. He began blogging and speaking about his experience and the e-Patient community with whom he had become connected through Dr. Sands. Dave’s latest book, “Let Patients Help!” is quite literally a handbook to teach patients and their loved ones how to become engaged and empowered.
Patients: An underutilized resource
Dave’s experience demonstrates that those who have a health problem or chronic illness can be valuable resources in healthcare. Unfortunately, Dave said, healthcare providers tend to speak “about patients in the abstract.”
“The traditional model is that the patient is like a car in a car wash. They drive in, the system does things to the patient, and they come out the other side.”
The e-Patient movement views people who live with illness as an important part of the process, following the adage: “nothing about me without me.” Dave pointed out that most new research takes five to 10 years to reach all doctors. He believes that the participation of patients is an essential aspect of long-term improvements to the U.S. healthcare system. He says: “This is not a movement to say that patients know everything. It’s a movement to say: ‘Just let patients help.’”
Dave recommends that anyone newly diagnosed with an illness who is looking for ways to help should “learn as much as you want about the disease and its treatment. Find out what you can do that might improve things.” Part of this process include connecting with communities of people with the same condition. “A good patient community can have lots of information that doesn’t reject the medical literature; it adds to it. And in some cases, like mine, it can make all the difference,” Dave said.
“Give me my damn data!”
Dave is also focusing his attention on a particular aspect of the e-Patient movement: for patients to have access to their medical records. This emerged out of his 2009 realization “that there was a lot of garbage in my medical records, a lot of just wrong information.” His rallying cry for this fight is: “Give me my damn data. You people can’t be trusted to keep it clean.”
Medical professionals are human, too, and may misunderstand or don’t get the right information into a record. In a setting where a lot of people have access to records, such as hospitals, things can get very messy and disorganized. One of the ways patients can help is by checking their medical records and making sure that they are accurate.
OpenNotes is an international movement working toward making healthcare more transparent by having medical professionals share their notes with patients.
“More than 20 million U.S. adults have that now, so that’s roughly 10 percent of the U.S. population,” Dave said. There are commercial and cultural obstacles to implementing OpenNotes, Dave said, but: “We are working on that change.”
Dave points out that it’s important for healthcare professionals to assist patients through the learning curve as they become empowered and engaged.
“It’s a mistake to judge someone’s potential when they’re new, so as patients start to participate in healthcare, it’s important to help them through the learning curve,” Dave said. “If we find ways that patients can really contribute, then the total competence in all of healthcare will increase.”
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Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.